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Meet the Member: Erin's Story


By Chelsea Goldstein

Meet Erin.  She has talents for research and storytelling, both of which helped her excel in her work as an investigative journalist and managing editor of several magazines. When she began her career, she did not know that these talents would be central to discovering, in her mid-thirties,  critical diagnoses including fluoroquinolone (antibiotic) induced dysautonomia, hyperadrenergic POTS, and neuropathy, that made all the difference in her health.

MeetMember_Erin.thumb.png.698b646115c01ecdf6dcc7a2b732c67a.pngErin’s story shares some common elements with many of our experiences. She had a swift and severe reaction to a course of antibiotics that left her with widespread nerve damage and severe disability. She began experiencing extreme dizziness, fainting, tachycardia, and sweating. She visited over fifty doctors in multiple states in pursuit of an answer. Many of the traditional medical tests, such as blood work and CT scans, came back normal, and several doctors told her that her symptoms were “all in her head” or caused by “just anxiety.” Despite these professional dismissals, Erin’s body continued to tell her something was very wrong. She followed this instinct that led her to discover dysautonomia (and DINET!), and she began to connect the dots of her symptoms. Through her own research, she identified the diagnostic criteria for dysautonomia and advocated for her own testing. An understanding neurologist respected her instincts, and testing confirmed that her symptoms were the product of dysautonomia.

While six months is six months too long to seek an explanation for life-altering symptoms, we know that Erin’s diagnostic process is relatively short in the world of dysautonomia. I attribute this to her tenacity in research and fearless self-advocacy. Had she not fought for her own diagnoses and trusted her body, she may still be searching for answers and living in the psychological torment of the unknown. She advocates for improved diagnostic processes for dysautonomia. Her experience of being dismissed, adding unnecessary psychological distress to her already debilitating symptoms is still very fresh. She also calls for all of us to value those doctors who are strong listeners with open-minds.

Part of Erin’s strength is being vulnerable about her struggle in the first years of living with her conditions. Prior to the swift onset of her symptoms, she was a newly-wed at the top of her field who loved to travel. Much of her identity was based on her accomplishments and go-getter mentality. She admits that she spent a couple of years grieving the loss of her old self, which impacted her mentally, emotionally, and spiritually. She had suicidal thoughts and questioned her beliefs—why do some people experience miracles and others don’t? Erin always viewed her friends as her family and then felt a distancing from many of them. She expresses some empathy toward these friends now, understanding that her disability may remind them of their own mortality.

Today, Erin has bad days and better days. On days that she is bed bound, fears surface that her progressing neuropathy will cause her to lose function in some areas of her body. However, she is actively working to adjust to her new normal and seeks gratitude for the things that she has. Perhaps, most importantly, is finding forgiveness. Erin is working on forgiving the doctors who did not believe her, and she is working on forgiving herself. Like Erin, many of us internalize unnecessary self-blame -what did I do to cause this? What could I have done differently? Is it really all in my head? She is also working on finding forgiveness for her God and finding a path forward with her own spirituality. Her healthy outlook reminds her that acceptance is a process. Erin also credits the strong support she receives from her husband as central to finding her new normal.

So, what can we learn from Erin? We can learn to fiercely and bravely advocate for our own bodies. We can work never to let a doctor’s credentials make us feel small. We can remember to value, and show gratitude toward the doctors and others who have helped us along the way. We can show ourselves love each day - no matter where we are in the acceptance process. In essence, Erin reminds us to be warriors who wear our battle scars proudly. At the same time, she reminds us that warriors experience incredibly challenging life circumstances, and, like true warriors, we must learn to be vulnerable about our mental, emotional, and spiritual wounds so that we can work to heal those, too.

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Erin, really fascinated by your journey. Thanks for sharing it. My entire downhill slide started in sep 2010 with Levaquin (a flouroquinalone) can’t believe it. Had 2 diagnosis at that time, now up to 13. Mainly Dysautonomia with neurally mediated hypotension, a, heart failure causing Pulmomay hypertension.. , COPD emphysema, mixed sleep apnea (includes CNS sleep) apnea.) . Very challenged. . Difficult to treat.

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